Caring for carers survey (C4C)canada

Experiences of family caregivers of persons with severe mental illness: An international exploration.

The aim of the Caring for Carers (C4C) survey was to assess the experiences of family caregivers in caring for their relative with severe mental illness from an international perspective, and to highlight the central role they play.
In Canada the C4C survey received 106 responses from caregivers.

Carers matter

The shift in mental health policies away from hospital-based care makes family caregivers essential in helping people with severe mental health problems to live in the community, but the role is often challenging and has a huge impact on the caregiver's own life.

Canada106

Norway49

Finland48

Russia48

Denmark146

Sweden7

Germany68

Netherlands21

Switzerland4

Belgium93

Ireland53

UK71

France124

Portugal11

Spain59

Italy46

Malta52

Israel10

Greece18

Cyprus2

Australia26

Austria49

Results are based on 1,111 respondents providing evidence of the continuing burden of caring for relatives living with severe mental illness and highlighting the contribution that carers make and the overwhelming impact this has on their own lives

1. The highs and lows of caring

Family caregiving for people with severe mental illness involves feelings of stigma and burden, however, these expericences can be coupled with positive caregiving experiences.

More than 1 in 3 family caregivers are at the point of reaching breaking point.

4 in 10 feels unable to cope with the constant anxiety of caring and experience these feelings "quite a lot" or "sometimes"

Family caregivers have typically cared for their loved one for 15 years.

Caring can also involve positive experiences with more than half of caregivers discovering inner strength.

Family caregivers have typically cared for their loved one for 15 years.

Caring can also involve positive experiences with more than half of caregivers discovering inner strength.

More than 1 in 3 family caregivers are at the point of reaching breaking point.

4 in 10 feels unable to cope with the constant anxiety of caring and experience these feelings "quite a lot" or "sometimes"

Caring can often have a detrimental impact on the caregiver's own health

1/3feels that the caring role make their own physical health worse

Nearly 4 in 10 are concerned about their own physical health

1/3feels that the caring role make their own physical health worse

nearly 4 in 10 are concerned about their own physical health

Percieved stigma of family caregivers because they got in contact with professional help*.
Canada ranks well below average, internationally:

*Mean scores on the percieved stigma scale, which consists of the following:

started to feel inferior

sometimes started feeling useless

sometimes I am ashamed of this

started feeling less capable than before

started doubting myself

7.4

Austria

7.7

Germany

9.1

Belgium

9.1Canada

9.4

Finland

9.5

Denmark

9.5

Italy

9.6

Mean of 22 countries

x

9.7

France

9.8

Spain

10.7

Norway

11

Ireland

11.4

Malta

11.4

Russia

12

UK

2. The real-life carer in canada

The typical family caregiver for a person with severe mental illness in Canada is a woman,59 years old, caring for her child with schizophrenia

For an average of 13 years, in line with the international average

Spending an average of 27 hours each week caregiving, five hours more than the international average of 22

Spending an average of 27 hours each week caregiving, five hours more than the international average of 22

More than half of family caregivers in Canada who took part in survey do not live with the patient. However, the report reveals that living with the patient or not does not necessarily reduce the burden of the caregiving role.

3. Carer support is lacking and their voice often unheard

Caregivers were equally satisfied and dissatisfied with the support from healthcare professionals nevertheless:

4 in 10 are dissatisfied with support from doctors

A 1/3 are dissatisfied with support from nurses

And only 3 in 10 were satisfied with support from their social workers

Half are dissatisfied with the ability to seek help and support from professional staff for their own needs

1 in 4 is dissatisfied with the support they recieve from their workspace

Caregivers were more satisfied with the support from patient/caregiver organisations (6 out of 10)

Caregivers don't feel involved in important decisions

Only 1/3 are satisfied with their involvement in important decisions in treatment and care planning

4 in 10 are dissatisfied with their involvement and ability to influence important decisions

Less than 4 in 10 carers feel that medical and care staff take them seriously

Fewer than 1 in 4 feel communication between healthcare professionals is going well

Less than 4 in 10 carers feel that medical and care staff take them seriously

Fewer than 1 in 4 feel communication between healthcare professionals is going well

Further essential information is critical

1/3 of family caregivers are dissatisfied with the information on who to contact in case of an emergency

Almosthalf of the family caregivers aredissatisfied with information on how the illness of their relative will develop in the longer term

4. Critical support for caregivers - what they are telling us they need

A staggering 93% would appreciate some additional support in their role as caregiver

With nearly half requesting a significant amount of additional support

Only 7% need no additional support

Only 7% need no additional support

Around 9 in 10 want more opportunities to meet and share knowedge and experiences with:

Professional carers 93%

As well as with other family members and informal carers 90%

Professional carers 93%

As well as with other family members and informal carers 90%

8 out of 10 want individual support from EUFAMI and family member organisations by providing/offering:

Information 88%

Emotional support 83%

Respite care 78%

Financial support 62%

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Download the reports

Global report

Canada report

Canada factsheet

About the C4C survey

The C4C is an international survey conducted by LUCAS, the Centre for Care Research and Consultancy of the KU Leuven in collaboration with the European Federation of Families of People with Mental Illness (EUFAMI). The aim of the survey was to assess the experiences of family caregivers in caring for their relative with severe mental illness from an international perspective, and to highlight the central role they play.
Respondents were recruited mainly through family caregiver organisations in the following countries: Australia, Austria, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Greece, Ireland, Israel, Italy, Malta, Netherlands, Norway, Portugal, Russia, Spain, Sweden, Switzerland and UK. Therefore, the results cannot be generalised for all family caregivers of people with severe mental illness.

1,111 family carers were surveyed

64% care for people with schizophrenia/psychosis

13% care for people with anxiety disorder

18% care for people with bipolar affective disorder

18% care for people with other disorders

15% care for people with depressive disorder

At least 26 million people worldwide are affected by schizophrenia and it is one of ten leading causes of disability worldwide.

The C4C survey was financially supported by Otsuka Pharmaceutical Europe Ltd. and H. Lundbeck A/S who has had no influence on or input to the development or the performance of the survey. The C4C report and the factsheets, infographics and website belong to EUFAMI and LUCAS KU Leuven and were made by external agencies thanks to in-kind support from Otsuka Pharmaceutical Europe Ltd. and H. Lundbeck A/S.